Bachmann-Strauss Centers of Excellence

Dystonia and Parkinson’s disease are neurological movement disorders with no known cure affecting 1.5 million Americans. In the absence of qualified care, they are frequently mislabeled or remain undiagnosed. Failure to secure proper diagnosis and access to comprehensive treatment forces patients to curtail their daily activities and live amid pain and frustration while searching for answers.

To meet the pressing challenges presented by fragmented, unorganized care and the growing demand for state-of-the-art therapies, in 2009, The Bachmann-Strauss Dystonia & Parkinson’s Foundation (BSDPF) established the nation’s first Dystonia Center of Excellence at Mount Sinai Beth Israel in New York City. Building on the success of the first Center’s model of practice, in 2013, BSDPF established Dystonia & Parkinson’s Disease Centers of Excellence at three additional major medical institutions: The University of Alabama at Birmingham, The University of California, San Francisco, and The University of Florida. The latest programs unite the clinical and research know-how needed to improve time to diagnosis, advance coordinated multi-disciplinary care, catalyze major advances in scientific understanding and translate these discoveries into new treatments.

In 2014, all four Centers of Excellence were awarded a collaborative research grant to study responsiveness of dystonia patients to DBS. The study will characterize patients with isolated forms of dystonia and collect DNA and clinical data that will enable researchers to better predict patient outcomes for treatment with DBS.

The New York-based Center of Excellence treats many patients with complex patterns of dystonia and other movement disorders, caring for 600 dystonia patients and 1,171 Parkinson’s patients in its first year of operation. Among the new initiatives is an expansion of the center’s services for pediatric movement disorders. Well–known for its ground-breaking work in dystonia genetics, the center is also launching a study examining neuromodulation of Deep Brain Stimulation (DBS) for dystonia.

UAB, with the only movement disorders program in Alabama, also serves Mississippi and parts of Florida, Tennessee, Georgia and Louisiana: a pool of some 6 million potential patients. In its first year of operation, UAB had 900 patient visits for dystonia and 3,500 visits for Parkinson’s disease. Among the initiatives supported by the Bachmann-Strauss Center of Excellence grant are the enhancement of programs in genetic counseling and expansion of fellowship training with a focus on dystonia, DBS, patient navigation, and botulinum toxin therapy.

The medical team at UCSF treats approximately 1,500 patients with dystonia and 4,000 with Parkinson’s disease annually, and has treated approximately 130 dystonia patients with DBS. With Bachmann-Strauss support, UCSF has developed several new initiatives including more integrated mental health support, a palliative care clinic for patients with advanced disease, and a neurogenetics clinic providing evaluations for genetic forms of movement disorders.

The Center of Excellence at UF is part of the Center for Movement Disorders and Neurorestoration, one of the largest in the U.S. for movement disorders. Since 2002, UF has treated more than 7,000 patients, providing “gold standard” dystonia and Parkinson’s care. The clinical portion of the center is designed to support basic, translational and clinical research into dystonia and Parkinson’s disease. Researchers are engaged in several collaborative projects, including drug discovery and an examination of the effects of anticholinergics in the brain.